Living with fatigue

[Kenan White]

I am on Luspatercept and I honestly can’t figure out if I consider it a successful protocol – I’m averaging 10 – 12 weeks in between transfusions but the average RBC is 7.5 to 8 which was workable in the beginning but as I age I’m loosing my steam and 7.5 is tougher to contend with – not to mention the very real and very debilitating side effects – fatigue and nausea are at the top of the list followed by joint and bone pain – I can’t stand the fatigue and have read that Ritalin has been used successfully with cancer patients – I’m willing to try anything to get my bounce back and rejoin the world in which playing with my grandchildren is a joy and it something I need to prepare for – let me know if anyone has fit out a way to work around the exhaustion 🙏

[Janet]

Kenan – sorry you are having a tough time. Is there an alternate treatment your Dr might try? Lustpatercept was an option for me, but I chose Revlimid and doing well on that protocol.

[mlskinner1949@gmail.com]

Hello Kenan,
Could you let me know your mutations? We are considering Luspatercept for my husband and are wondering if he may respond to it as you have.
I am so sorry you are experiencing such fatigue.
Sending our best wishes,
Mary Louise Skinner

[Bruce Shanley]

Hello Kenen
I was diagnosed with MDS in January of 2024. I started with a weekly injection of Reblozyl and then had Lenalidomide capsules added. My conditions worsened and was getting transfusions at 2 week intervals. I’m currently getting weekly injections of Retacrit and the regulated schedule of Luspatercept. For me it has helped. My last transfusion was 11/1 with RBC holding around 8 or higher. Bottom line I have good and bad days. Fatigue has been a struggle some days I get a boost of energy and on others turn into a couch potato. It is depressing but stay positive.
Wishing you the best Bruce

[Robert Sepe]

I know the feeling. My Hg was about an 8 September 2023. I couldn’t walk 50′ without having to stop and suck air. I was ready for a transfusion and the standard treatment. Meanwhile, I did a bunch of research on emerging organic compounds. Research conducted by lab assistants on MDS mice. One seemed to work. So I acquired the materials, worked up a dose and began my own treatment. Oncologist rolled his eyes when I told him. Day of recogning came when I went to the infusion lab for a transfusion. While sitting in the chair, the nurse’s phone rang and it was the doc. They had a long conversation. Long and short of it, she told me I was no longer eligible for a transfusion because my hemoglobin was now a 10. They could not understand what happened, but I did.
Eighteen monthsd later my Hg is a 14.1 (this morning. 1-19-25). I can walk a mile in 20 minutes or less. Drive 8-10 hours non-stop. And do anything, except climb 30′ ladders.

I’ll be 82 in 3 weeks and I live alone. Suffice to say, MDS is a manageable condition, if you catch it early. A tougher climb later.

If you want to chat, call. To get past the spam filter, leave a message.

Bob
919-417-5019

[Kenan White]

Hello – I am feeling much less fatigued now that I’ve been prescribed 20mg of slow release Ritalin – I take it every morning about an hour before eating and it’s made a difference – I had read about a few Dutch studies done in the early 2000’s and then spoke to my GP one Oncologist who both had experience prescribing to late stage cancer patients and ok’d – wish I had heard about it sooner – it does affect your appetite so you do need to watch that but for me it’s been a game changer

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